Friday, 30 October 2009

Today we took the kittens to be neutered. I thought a nice picture of Grolly's scar might be a fitting photo for this post. But they had other ideas and refused to show it to the camera.

Take two kittens, starve them overnight (and witness the destruction they can create when confined to one small room in order to keep them from eating), staple them into a crate, and ship them off to the vets.

Two kittens examined by the vet, a second opinion needed on Grolly's potential pregnant state, before a decision was made that she was almost certainly not, and that if she was it would be very very very early stages. So I decided to go for it, and asked them not to tell me either way afterwards. Ignorance can be bliss sometimes.

Two kittens left with the vet, two girls and myself off to meet some ROSY families for coffee and biscuits. One very truly scrumptious teeny tiny baby girl who just had to be held and gently squidged whilst her mother drank her tea. It's a tough job, but someone has to do it. On from coffee to a cafe for lunch, and swap several mums for one dad. One small boy squishing fruit puree across the table, and one dad who claimed to be interested in knowing how I'd blog that.* One call from the vet to say the kittens were awake and would really quite like to be collected now, if not sooner.

Back to the bus, two kittens collected, and back home. Where the kittens promptly went loopy. Now I've never had a hysterectomy (or been castrated for that matter), but I suspect that if I had, chasing my fellow kitten up and down the curtains and over laps and under legs would not have been my top priority for the hours post-op.

A quick tidy up before our new cleaner arrived. Odd hours; she now works 3-5 on a Friday. Perhaps not the most convenient hours for us, but as long as Little Fish continues to be begging for bed at 5PM, I stand a reasonable chance of at least starting the weekend with a relatively clean house. A cleaner with a young baby; relatives care for the baby whilst she cleans but I did say we'd be happy for her to bring her along. Forced to spend a couple of hours holding a little baby whilst someone else cleans my house - pretty close to heaven I'd say! Very different to our last cleaner - forget badly detuned radio hissing out scratchy old favourites, F was scrubbing my hob this evening singing How Great is Our God. And, in a first for any of our cleaners (for some reason we've had quite a few; I can't think why), she refused to start cleaning until she'd first had a short explanation about Mog - not the "what's wrong with her?" explanation, but the "how does she communicate and what should I know?" one, something I'm always happy to explain.

It's stuck in my head now; let's see who else can catch it.

Two small girls tucked up in bed now, one cleaner gone, and two kittens windowsill surfing. Goway has gone out, partly in disgust at their antics, and partly to prove to them that he's a big boy and can go out whereas they're stuck inside. One head spinning, with friends who are ill, friends' children who are ill, friends' parents too. Children in hospital, children in hospices, children hanging on at home but only just. I'm thankful the three of us are bouncing back from our 'flu, if more slowly than I'd like.

And now I'm going to take my spinning head and let it be horizontal. Roll on Monday and respite school.

Thursday, 29 October 2009

It doesn't seem like more than a few weeks since this was our world.And yet it must have been, because we had some of thisAnd a fair bit of thisbefore I lost the cable which connects the camera to the computer and started relying on the rubbish camera on my phone somehow ran out of time to stop and snap the world around us.

That first photo is nearly a year old now, I know it wasn't last month because, well, we didn't have frost last month. And because I can remember stopping the bus to take the photo, and it was our old bus.

But if it doesn't seem as though nearly a year has past since that photo, then it definitely doesn't feel like three and a half years since this one.Friends from the moment they met. Friends, despite seeing each other just a few times each year. Friends, despite all the many disabilities which some people might see as barriers to ever forming friendships.

Two girls who share an interest in pretty things. Who kick feet out (Mog) and squeal (Eve) to show off new slippers and a fabby new wheelchair cover.

It takes adults so long to get to know these girls, so long before they are confident at understanding communication, meeting needs, keeping the girls safe. Somehow the girls themselves bypass all that, dismiss the irrelevancies, and get on with enjoying each others' company.

We were together, as families, for just a few hours today. Mog was asleep for some of that time, Eve was distracted for some of it. But within that there was time for them to reconnect. To insist on being pushed side by side, to make eye contact whilst the rest of us ate lunch.

It seems like just a few months ago Mog and I were catching a ferry to meet Eve and her family for the first time. Since, unlike their mothers, they don't have the ability to chat nightly on MSN, they've probably seen each other maybe a dozen times in total. I think they last met in January. Doesn't matter; each time they reconnect and sit and grin together.

I don't know when we'll meet again. Busy lives, complicated lives, and an inconvenient distance between us. But whether it's six weeks or a lifetime, I know that they'l be delighted to see each other again.

Just as I'll be delighted to see some more of this again.I do love having seasons.

Wednesday, 28 October 2009

Get out of bed, walk into the sitting roomStep in something squishyShower the sheepskin rugLook at the two unused litter traysSigh.

Sit down, drink coffee, start to wake up.Notice acrid eau de tom-catSpend rest of day trying to hunt the puddleFail.

Get self and girls organisedLoad busdrive, late, to meet friendsSit.

Sit, and swap "I'm tired" stories.Sit, and take it in turns to have the child who has fallen over, the child who has fallen off the swing, and the child who is choking on a chocolate biscuit.Sit, and slowly start to wake a little more, swapping stories to make the teenager squirm.Smile.

Shop, make a start on some of the Christmas bitsLoad bus,drive home, get hopelessly lost whilst looking for somewhere safe to pull in and deal with backseat emergencyUnload bus, 90 minutes later than planned.Unload bus, re-enter house and gasp at ongoing acrid odour.Sigh.

Sunday, 25 October 2009

Inchstones is the term a friend uses for measuring the progress of our children. Forget milestones; that endless roll of holds head up, rolls over, sits up, crawls, walks, all before the child's first birthday. We celebrate the inchstones - my two year old balanced upright for half a minute this morning, WOOHOO! My five year old held her head up and looked me in the eye, HURRAH! My teenager didn't scream when we watched my choice of DVD, CELEBRATE!. Tiny things to the world at large; huge to those who know the child. I love it; I watch friends' mainstream babies, and they are doing so much, so fast. Changes visible from one Sunday to the next; miss a couple of weeks and there's a different child. Give me the slowness of the inchstone any day, days, months, years even to appreciate one change before moving on to the next.

We had our own post-lurgy inchstones today. Little Fish wasn't sick once - BREAK OUT THE FIREWORKS! Mog ate a teaspoon of avocado and two teaspoons of chocolate sauce for lunch - MUCH CHEERING! And I, I walked to Mum and Dad's house for lunch; it might only be ten minutes away but it's the first time I've been further than our garage all week. PARTY! Well no, sit in a chair and breathe for half an hour, trying not to use any further energy. But hey, we all left the house, and we're all getting back to what passes for normal.

Tomorrow we might even try driving somewhere. But for now all those capital letters make me feel tired. Night!

Saturday, 24 October 2009

I see there are a lot of you visiting after the Pick-Me-Up article discussion. (Non Mumsnetters, there was an article in the magazine about Mog's Mother, and therefore about Mog and myself). My apologies for bringing this discussion here rather than joining in the debate at Mumsnet; I try to avoid reading Mumsnet aside from threads I'm linked to. I'm sure it can be fantastically supportive, I know it can be hugely addictive, but I'm afraid it's a bit too robust for me. Still, it's an open forum which anyone can read, so I hope you don't mind me sticking my oar in.

There's a lot of talk about the book , and about the Daily Mail article which extracted carefully edited highlights from it (and altered some chronology) along with a few photographs.

To the people talking about the hidden meaning in the photographs, are you not aware that they were posed by a photographer?

I'm not aware that Julia has ever considered herself to be brave for leaving Mog at hospital. I think the fact that she is, once again, at the centre of a storm of bile and vilification, proof enough that she is brave for speaking up about her decision. Why don't you hear from other parents i similar situations? Because they're scared of facing the same reaction. They know people will turn on them, condemn them, say unthinkably awful things to and about them. I know from a number of other families that Julia's ability to speak up about this has helped them to talk about their own situations. It's a story which needs to be told; families need to know they aren't alone in this.

I apologise in advance here as I know I'm going to upset some regular readers, and I don't want them to stop reading or commenting. But, unless you have been in the position of actually choosing not to take your child home from hospital, or of actively seeking an out-of-home placement for your child, you have NOT been in the same situation. Yes, you have shared experiences, you have carried on coping (even if just barely at times, even when it has been unbearably difficult), you have children as disabled or more disabled or less disabled than Mog; you love your child and it has not been easy. But you've not taken that decision to stop. So, respectfully, you haven't been in the same situation. Julia is open about the fact that Mog was at risk if she took her home. Instead of hiding that, she took every step necessary to keep Mog safe. I'd say that's love, wouldn't you?

There have been people querying whether Mog was really that different to any other difficult, colicky, baby. Being the one who got handed the little scrap, I'd have to say most emphatically, yes. She was very different. Her little body was stiff, always. She didn't snuggle in for cuddles but stayed awkwardly boardlike. Her eyes saw nothing, her cry was pitiful and desperate, but not as fluid as most baby cries are. She was uncomfortable, and un-comfort-able. Forget gentle rocking; she needed whole body swinging for the movement to reach her. Hard for ten minutes, exhausting for hours on end. She couldn't sit in a baby swing or rocker, she couldn't sit in a buggy, and when lying down her body twisted and crumpled. She only slept when sedated with chloral hydrate. She couldn't suck a dummy. Feeding took forever, and most of the time she'd vomit it right back up again. And she was having seizures, muscle spasms, and reflux. Not your average difficult baby

That isn't to say she was the most difficult baby ever, it isn't to say that other parents would have been as worn down as hers were. But caring for her, even without all the emotional baggage, was exhausting. I managed, because she wasn't with me all the time. She used to go home overnight once a week, sometimes twice and she'd go home for the day or for a few hours several times each week for the first few months. So I didn't have to do the neverending bits. And, as a fostercarer, I knew I could pick up the phone to social services and ask for more help at any time - and that it would be given. I'm sure that varies across the country, but that wasn't the case for Mog's parents. And of course, I wasn't mourning the baby I had hoped for - I was just simply, overwhelmingly, in love with the precious baby I had. When I looked at her, all I saw was her.

To people talking finances; I'm not prepared to go into detail about our financial arrangements. I certainly don't now and did not as a foster carer get £2K a month to care for Mog. That said, I do receive allowances and they do amount to more than income support. We have enough money to meet all our needs, and most of our wants. That's good enough for me; I don't have to worry before I spend, so financial matters don't give me extra stress (unless it's letters from the tax man). You have no idea where the money from the book and the articles goes, and I've no idea where the idea that Mog's parents are rich comes from.

There seems to be some interest over Mog's legal status and how that came about. Mog is mine through Special Guardianship; this gives me the legal rights of any other parent (except that without a court order or permission of the other parents I can't consent to her marrying under 18, can't take her out of the country for more than 3 months, and can't change her name. None of which are things I'm planning to do). It makes us all Mog's parents, it makes us a partnership. I'm the one who is here day by day, so I make most of the decisions. But I have other people who know and love Mog who can help with those decisions. It means Mog isn't losing anything but gains our family in addition to her birth family. I'm not sure why losing legal ties to the rest of her family through adoption is something so many people seem to think would be good for her? She has three sets of grandparents, a huge circle of uncles and aunts and cousins spread across the world. She has people from her birth family and from our family who drop in to see her and take an interest in her welfare. I fail to see how this is a bad thing.

Mog lives with me, her other parents live a few miles away. Our contact arrangements are flexible - she spends days with them quite often, we sometimes entertain the troops here (our ballpool is always popular), and sometimes we do things together. She goes with them to family events just as she comes with us to our family things. They help me out regularly by taking her from Helen House so that I don't have to be there for eleven in the morning, or by having her for the afternoon so I can get to a party with Little Fish. I'm sure they would have offered to have her for some time this last week whilst I've been ill - except that the 'flu has been in their house too. We did have plans with some of her other family members for this week, but again, 'flu stopped play.

Of course not every child needs an arrangement like ours. But the arrangement we have really and truly is the very best arrangement for Mog. And that's what this is about really - one small child growing up knowing she is loved, appreciated, and cared for.

I hope I haven't upset anyone. Reading the comments (and I'll step away from the Mumsnet thread now) and seeing how harshly my daughter's other mother is judged, is upsetting. Reading people's assumptions about myself is just strange and a little amusing. Thanks for all the compliments! I'm pleased this blog reflects our lives and gives you and insight into the life Mog lives these days. I don't tend to talk very often on it about her family visits; I try to stick to our lives rather than telling other people's stories. But I did think this was important.

Friday, 23 October 2009

Grolly decided to keep an eye on Little Fish's manners.She chose food for lunchAnd put the shopping away.She was going to hoover, but had difficulty with the hose.Makes a change from lining up cuddly toys I suppose.

Little Fish took over too. It's never a good sign when, as you walk through the door, a little voice says "Mummy, don't be cross." I'll give her the benefit of the doubt and assume she was trying to feed the fish when she shook our entire stock of fish food over the kitchen floor, adding a fine layer of grit to the already copious grime.

But then, when exhaustion hit again, and my lie down on the settee moment combined with her sudden urgent need for lunch, she definitely took control. "Come on, Mummy, sit up now. Stand up now. Come on, darling, nearly there, come on darling, into the kitchen now please Mummy", and she coaxed me the length of the corridor and then talked me through the specifics of supplying ham and bread and chocolate spread.

Mog has been supervisor in all this. I do chest physio on her; it makes me cough, which makes her laugh, which makes her cough. Everyone's a winner. She sits, most superior, in her wheelchair, and watches the mayhem unfurl. Very quiet, content but not overenthusiastic about anything. Until bedtime happens, at which point she screams for England. Which has the handy side effect of bringing up a small mountain of phlegm.

Thursday, 22 October 2009

Wake up, blow nose, cough, go back to sleep.Wake up, wipe someone else's cough, go back to sleep.Get up, get the girls up, get feeds and meds all set up, music and DVDs on, head back to bed.Be smug about having managed to get everyone dressed and drugged.Bring littlest one into bed, cuddle up together, go back to sleep.Find some energy, cook lunch, do lunch time drugs and discover that although larger one's feed was set up, I forgot to turn it on (five hours earlier).Go back to sleep.

Realise new cleaner is coming next week and house is suffering, decide to tackle bathroom as smallest and therefore hopefully quickest room to clean. Emerge, several hours later, to discover Little Fish has been mimicking my efforts in the sitting room. Only, where I have been sorting items into rubbish, recycling, and really-need-to-find-a-better-place-to-store-that piles, she has been following the "when in doubt, pull if off the shelves and out of the cupboards and stir it around on the floor" method of cleaning.

Attempt to begin process of cleaning sitting room. Get into ridiculous shouting match with Little Fish over her desire to put the kittens in a box and pull it around the floor as opposed to my desire to put paperwork in the box and burn it file it away. Realise this is madness, settle for clearing the settee, and, as a compromise to the cleaning ethic, hoover the crumbs out from under the cushions.

Sit down, exhausted. Realise that although I spent several hours in the bathroom cleaning, I didn't actually clean the floor, sink, bath, or loo. Decide I might not actually be fully functional just yet.

Make macaroni cheese. Eat lots, watch Little Fish do the same. Remind Mog she can eat again once she's gone 24 hours without needing suction - I'm not hoovering cheese. Not after the hummus incident. Begin the getting the girls to bed process. Watch Little Fish vomit the macaroni cheese. Put the girls to bed.

Debate the wisdom of clearing the sitting room which is now officially way past disgusting. Decide instead to sit down again. Take phone call from my mother, who informs me that the adult care team in this county are continuing to attend clients who have swine flu, unlike the children's care team, who have refused to cover our visits this week. Discover I wasn't actually angry about having no care with all three of us ill until I had heard that. Shelve fury as it burns unnecessary energy.

Consider standing up to go to bed, but decide to rest on the chair for just a little while longer first...Tia

Monday, 19 October 2009

Little Fish decided to come down with the 'flu in style. Hysterical shrieks at intervals overnight; her bedhead apparently covered in moving circles, her Nippy mask coming to get her, her walls wobbling and more. I've not had a child with enough language to express delirium before; part of my mind stepping back, fascinated, whilst the rest of me tried to wake her up enough to calm her down and comfort her, all the time trying to set myself somewhere on her bed so the room wasn't spinning for me. Good times...

Mog seems a little better today. Looking back, I think she probably started this on Wednesday, which means it's given her five days of switching off, and now left her with just the cough and her usual post-infection "I will obstruct and obstruct and there's nothing you can do about it" nights.

I am feeling fairly hideous from the neck up, absolutely wiped and really wanting to sleep at regular intervals throughout the day. But thankfully the all over achey achey death would be a relief bit seems to be, if not totally better, at least better when the painkillers are at max efficiency. I'll take that as an improvement.

We sent a friend for Little Fish's Tamiflu and seem to have managed to meet one of the world's most abrupt pharmacists. Senior consultant in training I think. He wanted to speak to me before releasing the drug. I don't remember the whole conversation but "significant risk of death" will stick in my mind - I'm not convinced he actually needed to tell me that. Oh, and before we all start planning what to wear to the funeral, the GP wasn't convinced either.

She didn't seem so bad this morning; a little hot, a little pale, wanting to play with the playdough but happy to potter and not be too actively busy. A horrid cough, a stuffed nose, and complaints of aches but nothing to floor her. And then this afternoon she decided to start vomiting too, making me very pleased we hadn't sent her to school but also somewhat distressed at the clearup.

And it's been one of those days when the phone just keeps on ringing. Problems with the cleaner. The care agency, to say they'll send carers back in again just as soon as we're all feeling better. Which is great, but how about sending someone in now, when we're feeling significantly un-better? The cleaning agency again worried about the stability of someone who holds one of my doorkeys - marvellous. The GP, to reassure us the pharmcist had a poor choice of words. My mother, wanting a shopping list, which she has now delivered together with flowers and stopped long enough to give Mog a shower before running late to Guides. And Friend, offering to come this weekend and take over so I can rest.

Saturday, 17 October 2009

This blog is on hiatus until the black death swine flu has left our house.

Mog and I would appear to be sharing it. Little Fish does not make a great nurse. And I'm assuming that if our carers aren't allowed to come in when we have conjunctivitis or chicken pox, they also won't be allowed past the door for flu either. Of course, I can't get hold of them to check, so will have to paint some kind of message on the door for them tomorrow morning, but hey ho.

We have tamiflu. We have tamiflu nausea on top of flu yucks. And one very bored Little Fish.

Thankfully, we also have parents living round the corner who can be our flu friends. Little Fish grabbed Grannie this evening and informed her she needed to do the washing up.

In other news; I think Grolly might be autistic. She's still gathering all the stuffed toys together, but now she's lining them up...

Back when I have something more interesting to write about and when the monitor no longer hurts my eyes.

Thursday, 15 October 2009

A news article this week; raising awareness of the angels who visit those poor families who have sick, dying and disabled children. Saintly parents who struggle on, whose lives are made bearable by the angelic respite nurses who allow those parents to take a break and go shopping.

Sounds about right doesn't it? I mean, we know those children are suffering so terribly, and that the families lives must be sheer hell on earth? Those parents are such saints, I don't know how they do it. I couldn't do what they do. God only gives you what He knows you can handle (subtext: he knows I couldn't handle it; that's why He didn't give it to me). And those wonderful wonderful people who don't have to be involved, well they must be angels because no human being would ever choose to put themselves through that, would they?

Perhaps it guilts people into digging deep, handing over money to the Charities like ROSY, like the Well Child foundation, the children's hospices, and others who genuinely do {sarcasm mode: off} awesome work with our children and families.

But let's unpick that message a bit.

Firstly, by and large, we the parents are not extra special people. As a friend puts it; we're all only a car crash away from living with disability. Just because it hasn't happened to you, doesn't mean it never will. Are you going to gain a halo if and when it does? Are you going to spend your life harking back to the perfect times, looking forwards to the future (in fear or hope), or getting on with things in the here and now?Are you going to see your child as still whole and perfect and a delight, or will that child now be an intolerable burden? "I couldn't do what you do" is a nice safe insulation against that isn't it? I couldn't do it, therefore it'll never happen to me. I'd fall apart, but you haven't, so you must be so strong, so marvellous. Comforting I suppose. Not so much when you're on this side.

Fact is; life has a way of happening to all of us. How we live with that is going to vary hugely according to who we are. I may have chosen to parent my girls, but I certainly didn't anticipate everything that's happened to us. My reactions are shaped by the person I am, whilst at the same time the person I am is shaped by those events happening around me. Not saints, not super humanly strong. People. People who get tired when the child child is up in the night, people who worry when their child is sick, and people who have a whole lot of things they like to do which have nothing to do with their child too. I am happy when my child is happy, sad when my child is sad. If you prick my child, do I not bleed? But I also bleed when you prick me. I also get ill, get old, go out with friends and stay up obscenely late and feel utterly horrible the next day, make biscuits and eat too many of them, and spend far too long on the internet. It's not all about the child, it's not always about the child.

And that's where the nurses come in. When you're tired, when you're beyond tired, when you are so bound up in your child's needs you can't even see the next time you're going to be able to walk out of the child's bedroom, let alone the house , that's when the nurse comes. And she doesn't walk in, make loud comments about the state of the house and tell you your child will be fine. She comes alongside, checks how you do various things, and then invites you to step away for a while knowing that she'll take over. And sometimes you leave the child and fall into your own bed, and sleep. And sometimes you leave the house - I have been known to just sit in the car just out of sight, not wanting to be any further away but just needing the space. Time to concentrate on your own breathing not be listening out for your child's.

And then there are times when the nurses come and your child is not at death's door. When you know the nurse is going to be spending their time not suctioning and medicating and trying to keep an airway open but building relationships, painting, giggling, just giving you a chance to re-energise. A chance to walk outside and notice the sky, not having to focus on finding the smoothest path for wobbly wheels. Like any mother of preschool children, the chance to just walk around the supermarket without having to deal with the tantrums and the whining and the knocking great stacks of tins and packets over with a badly sited wheelchair handle. Oh, ok, not quite like most mothers there... But just the chance to step away from the child for a few hours and step back into the other things that make me me.

That's what the respite nurses give us. The community nurses give us the confidence to be the parents. Being the parent of a medically complex child can be very de-skilling. You are surrounded by experts who tell you, right from the start, about all the things you must be doing with your child. They all have different priorities. She mustn't be allowed to scream; it'll make her sick and she needs to put on weight. But she must be made to eat, despite the fact this makes her sick and she needs to put on weight. You mustn't be ruled by her, but then you mustn't let her scream. She must do these painful exercises, attend this clinic, have that surgery and practice this. She must keep her body in a good position at all times, but be encouraged to move around freely whenever possible. And so on. And each doctor looks at a different piece of the puzzle, and wants us to expend our energy on fixing that particular piece in place. You have a toddler who eats normally; he has a cold, loses his appetite, and you don't worry too much because you know he'll make up for it when he's bette. You have a child who is tube fed, and they have a prescribed amount of liquid which should be taken at around the same time and pace each and every day. And you either carry on despite the child feeling horrible, or you cut it down and then get frowned at next time you see the dietician. Your average child grows, gets hungrier, and you increase their food. Your tube fed child grows, you wait for another appointment with the dietician where it is decided that although the child is hungry and has grown a little their weight is not a problem and therefore their calorific intake should not be increased.

When every aspect of your child is managed by a qualified professional, it becomes very hard to trust your instincts as a parent. My child appears to be a little out of sorts; I think something is wrong. But which doctor do I go to see? The GP sees "complex child better give antibiotics just to be on the safe side". The paed sees "patient not at death's door, no need to admit, see GP". The neuro sees "child unwell but not neurological cause" and so it goes on. Mog stops breathing at night. There have been times when she has stopped breathing long enough for me to hear her not breathe, wake up, walk out of my room into hers, and pick her up to get her breathing again. She has no treatment for this and no ongoing supervision for this. ENT say tonsillectomy might or might not help, they'll do it if I want but if we do she might need CPAP afterwards. Respiratory say only mild apnoea observed during sleep studies (which are always done when she's well, not when she's ill) not significant enough to warrant further treatment or investigation and probably neurological in origin. Neuro says see ENT. And round we go, and meanwhile we live with the fact that I might not hear her stop one day.

The Community nurse sees the whole child. Sick and well, she is the nurse who supplies medical equipment. Who has the experience with complex children to help unpick things. Who knows the various doctors, by reputation if not in person, and knows which one to call for different things. She is the nurse who will go into school and hammer truths into hard heads train non-medical staff in the needs of the child. She is the one who is at the end of the phone when I am not sure what I'm looking at, who can tell me to put the phone down and call the doctor, or tell me to get some sleep (or chocolate).

I think it's deeply insulting to call our nurses Angels. These aren't perfect creations, dropped down from heaven and somehow landing on our doorstep, crafted to do what needs to be done and with an innate knowledge of how best do to it. They're people, that's all. People like me, people like you - people who decided at some point that nursing was what they wanted to do, and who went through not inconsiderable amounts of training in order to get the qualification which entitles them to do it. Ward training, college training, learning from others and from text books, practicing on dolls and oranges and extremely patient patients (now there's a real saint; the kind of person who lets a student nurse practice taking blood for the first time). Long hours, low pay, second hand bodily fluids.

Our various nurses aren't angels. They get angry, tired, frustrated, hungry, sick, depressed - and they put that aside and get on and do it anyway. They have to deal with grouchy parents, stressed parents, parents with ridiculously nitpicky standards over things which probably don't matter very much - and they smile, and grit their teeth, and care for my child the way I want my child cared for. It'd be nice to think of them as something other than human, would make it easier to justify or at least not apologise for my nitpickery and grouchpottery. It would be lovely to imagine them never needing a day of sick or a holiday, constantly unbendingly strong and righteous. Sorry, but it doesn't work that way.

Actually, if we're talking angels here, it'd be quite nice to think of them able to continue to visit my daughter after she died - but we're not, we're talking people. People who, when Goldie died, put aside their own grief and came out to care for the other girls until I could be with them. Not heavenly beings who gathered to sing a praise and a lament and to escort her into glory. Well, I don't think they did anyway - if any of them did, and are reading this, I'd love to hear a report of how that went.

Paying for angels might be a nice way to raise funds, but it's not really what we're talking about here. Real life is much messier than that. People are real - nurses and parents and let's not forget the children. Imperfect but somehow muddling through. Yes, the nurses in our lives make our lives better. Not because they are angels, but because they are human, thinking feeling humans, and because they choose to becoming involved in our messy painful and sometimes smelly lives rather than walking on by.

Tuesday, 13 October 2009

For the many people who assume that since the girls are now both in fulltime school I must be sitting around doing nothing all day...

8.22 and the builders are here; they need to do some very last work to the concrete ramp, so the girls and I wrap up and head outside to wait for Mog's bus.

8.30 and Mog's bus is here; I post her in its general direction and Little Fish and I head off towards school.

8.33 one of the builders catches up with us at the traffic lights; I've left my handbag on Mog's chair and no one knows what to do with it. Setting aside the "You didn't bring it with you?" thought I suggest they take it off Mog's chair and put it on the kitchen table for me.

8.40, we arrive at school to find a large notice informing us all children need to use the main entrance rather than individual class entrances due to building works. Fun times.

I drop Little Fish off, and at 8.45 the phone rings. Mog's school. Instant panic mode; what's gone wrong on the bus for them to be calling now? But no, they're worried about my handbag and the bus company wants me to be told that the escort personally placed my bag on my table. I thank the school, ask them to thank the transport company, and walk home.

9AM and I am apologising to the builders; despite the fact the builders have a key to the front door and have been in and out of our house all week, the people on the bus felt they could not be trusted to touch my bag and so insisted on entering my house themselves to return the bag. This seems pointless; if the builders were that untrustworthy though could simply have riffled through the bag once the bus had left, surely? Given the usual state of the house when we leave for school, I am now awaiting a phonecall from social services after bad reports from the bus company.

But the girls are gone, and I can expect to have six hours without either of them. I put the kettle on.

The phone rings - a utilities company not selling anything honest gov but wanting to know why I don't switch to them.

And then a medical phone call.And another.And another.

A two minute chat with a friend, cut short so the builder could talk door handles.

Another medical phone call.The post - two more medical appointments and one social services thing.

A visit from our cleaner, who managed to destroy my hoover, amazingly enough not in the way our hoovers generally die - overwork - but by deciding using a bag was optional. A discover that last week she had thrown out a small but essential part of the hoover - the bit which holds the bags in place. I asked her to stop using the hoover without bags.

A supermarket trip, returning to find cleaner still hoovering without using a hoover bag, despite me having told her she was damaging the hoover.

A phone call to the cleaning company.And another.

I put the kettle on and made a pumpkin pie.

Lunch, interrupted by phonecalls from more professionals.

Phone battery died at this point.

And then Little Fish was back from school, the phone was still ringing off the hook, the pie was burning on the outside and soggy in the middle, the kittens were rolling around all over the floor biting each others' necks, the builders were saying they had completely finished but I was discovering the several things left very undone, and then LF needed to go to bed, and then Grannie came to babysit and was disappointed that LF was already asleep, Mog and I went to Brownies and then our carer was late and now it must be way past bedtime and I'm still not sure where the day went, although I dimly recall I had time to play Sudoku on my phone a couple of times inbtween calls.

And that's without medical appointments, visitors, anything out of the ordinary really.

So the question I have for those who work as well as raising children, "When do you do the all I do in my day?"

Monday, 12 October 2009

These would be tweets if I were a twitterer. I'm better at whittering though.

I have not had to clean kitten poo from any surface other than their litter tray recently. I can't decide whether to be happy that they're finally using the tray properly, or very scared when I think about the inaccessibility of the places they may have chosen to use instead. **********************************************************Mog is very much enjoying having an en-suite house. Enjoying it so much she does not want to get out of bed in the morning, do anything other than lie on her bed in the afternoons, and unfortunately does not wish to waste any time whilst in her bed on anything as unimportant as sleeping. ***********************************************************I officially don't care any more about how tired Little Fish is getting on school nights. After this weekend, a child who goes to sleep at 5PM and wakes at 8AM is just fine by me. ************************************************************Grolly is at present sitting behind my head, chewing my hair. Is this sweet or annoying? And ince it can't make my hair look much worse than it does already, might it actually improve the look? Layers? And what will this do to her furball problem? ************************************************************My first fosterplacement in four years arrived just six weeks before a planned adoption. My next fosterplacement after that arrived just one week before a planned trip overseas. What should I book next in order to have a child placed? ***********************************************************Grolly is 7 months old and as yet unspayed (it will happen, just hasn't happened yet). She got out one night last week, don't ask me how. Now today she's walking around rounding up teddy bears and posting them into a dark corner of the airing cupboard. How worried should I be? ************************************************************This is a cheat post; I wrote it last night and scheduled it to be delivered now, knowing that at the time when this appears I will be posting children into bed and attempting to clear a space on at least one seat in the sitting room for our babysitter whilst simultaneously trying to find my Guide Necker and something vaguely related to Uniform. I mention this only as otherwise this final point makes less sense, it apparently being early evening and all. But, why is it that having been a lark for years and years I am now dragging myself out of bed in the morning and not really waking up all day, finally starting to feel a little more awake right now at the time when I should have been in bed an hour or more ago? Any ideas for resetting the clock? Cos jetlag (life-lag?)'s getting seriously old now.Tia

Sunday, 11 October 2009

Fun times this morning; we arrived at church to the always joyous news that there was no Storyteller (leader) for Little Fish's Sunday School group. One teenager, two scheduled helpers, one extra press-ganged into service, and thirteen 2-4 year olds. Funny how a bit of perspective helps: as the children started pouring in we still had no keys and therefore not only no Storyteller (and no story to tell), but also no colouring pens, no paper, and, most important of all, no access to biscuits and squash. And then the keys turned up, and suddenly not having the person in charge seemed unimportant and manageable. More perspective - today was, without warning, the one Sunday in the term when the children all go into church for communion. Attempting to walk a handful of preschoolers across a carpark from barn to church is not unlike attempting to herd kangaroos through a field of bulls. And yet, without a programme, without a Storyteller, making the attempt was worth it for the joy of handing them back earlier.

Bonus; we found a vat of playdough in the 'fridge. Bad times; the pink was mouldy. Two of us outvoted the third who was attempting to scrape the mould off with a rusty teaspoon, and decided the children could manage just with the somewhat repulsive looking green instead. And bingo (I'll stop with the b's soon I promise), half the children bounced over to the table and spent the next half hour spreading slimy green dough as far as possible over hands, Sunday clothes, table and carpet. Good times. The other half meanwhile spent their playtime dismantling the toy kitchen, jumping on the toy cars, and squabbling over the baby buggies. Ah, such sweet children.

And so time passed until that magical moment; "Tidy-up time". And the children were transformed from destructive monsters creative beings into genuinely helpful, enthusiastic little people; gathering books and trains and sorting babies from plastic play food, sifting everything into the relevant boxes and then dragging them across to the cupboard, small boys staggering solo under the weight of the Brio, smaller girls carrying boxes of books one girl to each corner. And one small Little Fish who did nothing constructive but wheeled herself up and down the room pausing, hands on hips, to shout "come on everybody, tidy up time now!" I can't think whre she gets it from.

Small children all seated on a rug, and the box of books raided for the first not-too-twee bible-based story to read as they sip squash and eat biscuits (hmm; the squash and biscuits can't possibly have anything to do with their enthusiasm over tidying up can it?). And out comes the stoy Jesus told, how it's easier for a camel to pass through the eye of a needle than for a rich man who loves money to enter the kingdom of heaven. Setting aside the theological debates about needles and gates in Jerusalem (which this little book ignored totally), I have to ask if this was the best story for a bunch of small children:

So - there was a man who loved his money.I love my Mummy tooNo, this man loved money.I love my Mummy. And my Daddy.And I love my Daddy too.I not got a Daddy, I got a sister thoughI've got three sistersI have twenty seven a million sisters ner!

Lovely, now Jesus said that it was harder for a camel to squeeze through the hole at the top of a needle than for this man to go into Heaven. Does anyone know what a camel is? Anyone? Oh, no, that's not a camel, that's a piece of playdough. No, no, don't get the rest of the playdough, I'm sure it was lovely but we're reading a story now.

Ok, so let's think about needles for a minute.my Mummy's got needles.I got a big needle and it scratched meIf you stood on a needle it would go right through you and you would dieif a needle goes through you you will DIEif you stand on a needle and you have crocs on, and the needle goes through the hole in your crocs, it could be rather painful could it not?

Yes you're quite right, it would be. But that would be a needle going through us - we couldn't fit inside the needle could we? I pricked myself with a needle once.My brother's got a needle.So, I got six brother.I got twelve brothers.I have only one brother but Mummy says that's quite enough for us, thank you very much.My brother is called CalebNo, I am called Caleb,No, I got a brother called Calebno, I got two brothers and one is called Caleb

Does anyone not have someone called Caleb in their family?

Right then, why don't we have a story about a boy who had lots and lots of brothers? [gratefully receives book from other helper who has delved more deeply through the pile inbetween wrestling small boys either called or with siblings called Caleb].

This is a story about a boy called Joseph.[silence]Joseph had lots and lots of brothers[we all count the boys in the picture]Joseph was his Daddy's favourite[pause, wincing, in anticipation of many aggrieved accusations over supposedly favoured siblings, probably called Caleb. Am faced instead with ongoing breathless silence]Joseph's Daddy gave Joseph a very special coat with lots of different colours in it.[ongoing breathless silence, thirteen children utterly gripped by the story or else there was something very odd in those biscuits. We continue with the story, children fascinated, beautiful concentration, until it starts to get interesting]And so Joseph went to Egypt where he was a slave and worked for the king. Joseph had many adventures before he saw his family again.

[and I turn the page, to reveal two words] THE END.

The END? Joseph goes to Egypt, and you leave the story there? Who decided that would be a good idea? I have a rugful of enthralled children here, they don't want to leave Joseph stranded in Egypt with a scary picture of a man with a whip.

And so they sit, and, attempting to keep to the very simple basic language of the book, I try to tell the rest of the story. Or at least edited highlights. But I'm losing them. We're heading perilously close to more conversations about needles and Caleb. Perhaps we could thread Caleb through the eye of a needle? Or thread a needle through a Caleb? We seem to have plenty of spares.

And then, just as attention is about to drift away completely, salvation appears in the form of a head round the door and a "this is your 2 minute warning", and we are off, standing up and herding our little flock over to the church.

It's a nice church. It's a lovely building. And it's rather small and crowded when all the children are here. Mog having decided to entertain her Sunday School group with a demonstration of the many colours of phlegm, she is the last to arrive. So we hover in the doorway, attempting to be as inconspicuous as it is possible to be with two excited children and a rather large wheelchair.

We take Communion, and it is great to have the children in with us. We are a congregation, a community. And it does feel strange to me that whereas Jesus was fairly clear about letting the small children come to Him (and yes, I do feel I suffered the children this morning, why do you ask?), we, on the whole, exclude the junior members of the church family from drawing near. Not a criticism; I enjoy child-free Communions too for the peace and solemnity and recognition of the awesomeness and wonder of the occasion. But I also like the hurly burly enthusiastic real everydayness we get from having the children present. And I like the fact my girls can receive a blessing at the altar rail, even if the shuffle pull balance hop kneel and wobble and stretch and hold to get them there isn't the most dignified of dances.

And then we head back to our pillar by the door, and a couple more songs and a prayer or two, and then it's make way fast before we block the exit for everyone else. And into the hall for an extremely well-earned coffee. Communion aside, Little Fish's teacher does this for six hours a day, five days a week? With thirty of them? She needs a bigger Christmas present!

TiaDisclaimer: I like Caleb. All of them. No Calebs were harmed in the writing of this blog. And no disrespect is intended to any Caleb or parent of a Caleb. But would anyone care to enlighten me as to the sudden popularity of the name?

Saturday, 10 October 2009

And perhaps I need a new section in my list of blog - finally, someone else from our family has joined the blogging world. My brother and sister in law, and their two children, have just moved quite a bit further away than Aberdeen, and for those who are interested in our family, or else totally uninterested in us but interested in birds, you can find more of what they're doing over at Weavers and Whatnot.

We went to the fair on Monday, said goodbye amongst a welter of overtired children, and they flew off on Tuesday. And, unless we're feeling extraordinarily adventurous or else they're feeling especially homesick, I'm suspecting that parallel blogging is possibly as close as we're going to get for the next couple of years.

Friday, 9 October 2009

I don't get to hear much about Little Fish's day. By the time she comes home, she's ready for a sandwich and bed, and in the morning she's looking forwards to the day ahead, not thinking about yesterday. If I ask her directly, she tells me she did nothing; occasionally I'll get a dribble of information about how much she liked the icecream or cauliflower cheese, and sometimes her 1:1 will mention something particularly important, but that's usually to do with the colour of her urine or another new bruise.

She's happy, she's busy, she's clearly doing lots of thinking; I can live without knowing the specifics. But there are small hints of new things - things like showing me how she can now push herself up to help with dressing and undressing. Her preference for cardigans over jumpers as easier to get her arms into all by herself. Little things like making her own sandwichesand, when she thinks I'm not in earshot, she'll talk herself through different bits of the day, ordering them in her mind and filing them away until useful.

Sometimes these are easily understood - hearing herself play "Simon Says" to herself was more than just entertaining; she let me join in and didn't fuss when Simon Said it was time to get her pyjamas on, time to wiggle her legs, time to do everything in her evening routine.

Sometimes these are frustratingly intriguing - I would love to know more about the song she was singing to herself yesterday. Is it a real song? Is it her putting to music her thoughts about the day? Is this a lesson in personal relationships, moral teaching, ethics? Or is she just learning that not everyone loves her? Small child in the bathroom, singing quietly to herself"Some people are my friendsSome people [pause]Are not."

I am enjoying having my littlest schoolgirl around. But I can't help wondering where this little girl went?Tia

Thursday, 8 October 2009

We have a wall againA folding wall, which some people might think of as a door I suppose. Still needing floor, handles, latches and paint, but Mog has her bed and her privacy again.

Sadly what I was hoping to be terrible smelling screed was in fact very stale kitten poo; Mog's bedroom is now sparkling inside and her under-the-bed-storage-hole is now gleamingly clean. Why is it always the afternoon after the binmen have been I find I need to do a major clearout?At least outside is messy enough that a couple of foul smelling bin bags sitting there for a while won't exactly be the first thing the rest of the world notices.

Progress though;my very pretty driveway which should be set enough for me to start using from Monday. Provided, that is, that the builders can sort out some kind of concrete access pad so I can drive across the rubble on the right to reach the driveway on the left.

More progress of a rather different kind; the kittens managed to rid themselves of large furballs this morning; I'm hoping this may have been the cause of their problems and that they'll now be very happy. Meanwhile the scent of stale kitten poo has been replaced with that of freshly ground pepper as I attempt once again to tempt them into using the litter trays rather than the floor/laundry pile/bathtub.

And a rather nicer progress; more reports from visiting professionals delighted by the welcome they are receiving at Little Fish's new school and really pleased with her progress so far. Sadly she's still wiped out; and having been awake since eight o'clock this morning it's now five minutes past five and she's begging for me to come and put her to bed. But hey, progress, she ate her tea rather faster than usual so did actually manage quarter of an hour playing this afternoon. Always good.

Because although it's only been less than a fortnight I'm losing track of how long it's been. Outside, each new paving slab takes an entire load of concrete to set in place. I'm told this is unusual and will mean I could park a small house on the driveway when it is done. Not having any grand desire to do so, I half wish they'd find a quicker and cheaper way of doing things, but these things will take the time they take.

No builders outside yesterday as it was raining until 9am. I'm not entirely sure why they couldn't come once the rain had stopped, but meanwhile Mog's new doorway has been cut, giving her bedroom that "hey, others have ensuite bathrooms but I have an entire ensuite house" look, and filling her bed with boxes and dust so she's camping out in the cot in my room. This is not entirely successful, hence I'm posting at 3am having evicted her to a more upright position back in her wheelchair. Obstructo-gal is entirely too noisy for me. She's now living it up in the large gap by her bed, projector on, music playing, and if her singing isn't necessarily any quieter than her squeak hiss judder mode of breathing, it is at least easier on my ear, and I'm sure more comfortable for her too.

In answer to a a few questions, yes, Bob is and was a real builder, not a mate doing me a favour. No, he hasn't finished yet and I don't suppose he ever will. This isn't the last bit of work we need doing to the house but I think I'll recover from this one before going for the next. And yes, I do know what time it is.

Monday, 5 October 2009

Two girls very happily occupied. One house un-enterable due to building works, so not even a hint of feeling as though I ought to go home and do some of the many tasks waiting for me there. And yet a desire not to spend the entire weekend curled up reading books and exploring the charity shops down Cowley Road.

So...From this:To this:I didn't quite finish it before coming home, but stitched up the last bits this morning. And now my wrists ache, my fingers are cramped, but I have the world's largest and snuggliest new jacket ever.

Of course, being me, my knitting skills aren't quite right - it's substantially wider than it's supposed to be, and I have somehow managed to use five balls of wool less than the pattern called for. So the next question becomes, which child needs a matching jacket the most?

Sunday, 4 October 2009

Thursday morningSunday afternoon"It'll be a week or so" said the builder as he started on Monday. Silly me; I believed in the "week" bit, and tried to park in our new driveway on our return home this afternoon.

Still, the new ramp's nice. Wider than the other one, and with a flat platform at the top; Little Fish can now wheel herself up to the top and knock at the door. Before, she'd take her hands off the wheels to knock and gaily slide back down the ramp. Entertaining for those of us watching, but frustrating for her.

Less nice is the total lack of progress on anything other than the ramp, the piles and piles of supplies spread across the front of my house and spilling over into the road, much to the consternation of our neighbours. And les nice too was the kind way in which the builders had sealed the building site off for the weekend, cunningly blocking access via the ramp for us.

Ah well; watching their progress will give Little Fish something to do for the next week too, and the longer they take outside the longer Mog will have before having to move out of her bedroom for a while. And they can't possibly be as slow as Bob can they? Can they?

Saturday, 3 October 2009

No blogging yesterday; an adminny morning spent rounding up Goway and delivering him to the cattery, double checking particularities with the builders, and then a not unpleasant and thankfully short but somewhat stressful meeting in the middle of the day.

Back to the hospice for girlie cuddles and the almighty ego boost which comes from a Little Fish every time I see her after disappearing for a couple of hours. Full house this week; not all the bedrooms are in use but families staying in all the flats and doubling up in at least one of them. So a chance to talk to each other. There's a shorthand between hospice parents; lines like "oh and then when my oldest son died we..." don't prove to be shocking conversation stoppers; we've all either faced it ourselves or live with the possibility/probability of dealing with it one day. So as younger siblings zoomed around pushing older sisters' wheelchairs like racing cars, and as carers and nurses dodged around avoiding injury, we mothers sat and chatted, about the things parents talk about. Schools, clothing, recipes, polite negotiations about the last doughnut, nursing care, physio, learning and deterioration, relatives and how to avoid them, the outrageous things people say. Life on a plate with a side order of special needs.

Thursday, 1 October 2009

A random scene from our walk to school this morning. I'd love to know the story behind it.

We had a simple day planned today. Cardboard to the recyclers, cats to the cattery, us to the hospice. I was shouted at by another woman at the cardboard bank for having too much cardboard not adequately folded. Goway ran away, so only two kittens have been posted safely. Checking the girls into the hospice was simple enough, but getting to the point where I could leave them asleep and come over to do my own thing took a ridiculously long time, and was complicated by a certain lack of equipment. And then my parents phoned to say they had seen the result of today's building work and didn't think my van would fit onto the new drive. Joy.

But, Goway has returned, and is safely coralled in the sunroom. I'll pick him up tomorrow and check the drive again at the same time. And, several hours later than planned, I am here, watching a DVD and knitting a new top. It all comes together in the end.

Meanwhile, cuteness from Little Fish. This morning I put a new dressing on her exceptionally sore gastrostomy. "You doing my dressing, Mummy? Ah look at me, I all dressed up now."

And, on the way to school, "Mummy? I need to ask you. Sometimes, sometimes people fall down. And then they cry. Why is that?" Why indeed.

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